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Each October, families that blog about life with Down syndrome commit to a daily exercise of blogging every day (31) in October to raise awareness and acceptance about Down syndrome (T21). For the past seven years I have happily jumped in the fray and shared pictures, stories, resources and information about Down syndrome. I’m entering my eigth year of this beloved practice. The first two years that I joined 31 for 21 after the birth of the Quail, I continued on my typical daily blog posts at that time, taking care to ensure that I did post every day for the month. I was still able to maintain a semblance of order and time to devote to daily writing with the categories I initially organized my thoughts around. The third and fourth year, I had not had the time to post daily musings, in a good while, but I still had an extensive archive of photos I hadn’t had time to edit and share yet. So, I posted mainly images labeled with little tidbits about the Quail that make her both extraordinary and ordinary.
I hit my peek in 2013. In that last year, I LOVED participating. And still have every intention of making it into a book for myself. Our friend Molly Flanagan had shot some wonderful lifestyle photos of our family and our daily goings-on and I had told her that I loved them so much that I could narrate a story about each image. And that is what I did. I continue to go back to these photos and narratives. They are a gift- each single one. And I reread and still nod along as if I’m reading someone else’s writing and story. I still find myself thinking- yes! That’s what MY life is like. And then others shared with me how they felt about this project and how they could relate to it. And then writers that I love shared it with their friends. And then wonderful things happened. I dug out my brave bones, like I tell my children to every day they go out into the world and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. And the next year we did just as well. Both times I was humbled, and felt so proud to have my village lift me up and help me help myself and others. The response was unexpectedly overwhelmingly positive. People I hadn’t had the pleasure to meet in person contributed and took the time to get in touch to say how Down syndrome is a part of their life and how lovely and inspiring our Quail is. The good people at my work took it upon themselves to write up our advocacy efforts in our statewide celebration for a nomination for a humanitarian award which we won this spring. And later that summer I was informed that the nomination was then passed on to the regional competition and we won that as well! If I’m going to be recognized by my workplace- there is no greater joy then realizing that while they appreciate my work- they also appreciate my heart and those it belongs to. The next year we did the same fundraising and actually had friends join us for the walk. I managed to write and then, well then the big void came on, but all the voidier than even the years past. And in 2015. It was even harder to find the time and energy to write. And I only managed to write for seven days.

But as the saying goes, I’m going to stand up again. Because you only fail if you fail to try. And there’s a little girl counting on me. On us. On every single one of us. And if she can stand up and try again. So can I.

Each October, families that blog about life with Down syndrome commit to a daily exercise of blogging every day (31) in October to raise awareness and acceptance about Down syndrome (T21). For the past six years I have happily jumped in the fray and shared pictures, stories, resources and information about Down syndrome. I’m entering my seventh year of this beloved practice. The first two years that I joined 31 for 21 after the birth of the Quail, I continued on my typical daily blog posts at that time, taking care to ensure that I did post every day for the month. I was still able to maintain a semblance of order and time to devote to daily writing with the categories I initially organized my thoughts around. The third and fourth year, I had not had the time to post daily musings, in a good while, but I still had an extensive archive of photos I hadn’t had time to edit and share yet. So, I posted mainly images labeled with little tidbits about the Quail that make her both extraordinary and ordinary.
I hit my peek in 2013. In that last year, I LOVED participating. And still have every intention of making it into a book for myself. Our friend Molly Flanagan had shot some wonderful lifestyle photos of our family and our daily goings-on and I had told her that I loved them so much that I could narrate a story about each image. And that is what I did. I continue to go back to these photos and narratives. They are a gift- each single one. And I reread and still nod along as if I’m reading someone else’s writing and story. I still find myself thinking- yes! That’s what MY life is like. And then others shared with me how they felt about this project. And how they could relate to it . And then writers that I love shared it with their friends. And then wonderful things happened. I borrowed the cowardly lion’s heart and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. I had never been so proud to have my village lift me up and help me help myself and others. The response was unexpectedly overwhelmingly positive. People I hadn’t had the pleasure to meet in person contributed and took the time to get in touch to say how Down syndrome is a part of their life and how lovely and inspiring our Quail is. The good people at my work took it upon themselves to write up our advocacy efforts in our statewide celebration for a nomination for a humanitarian award which we won this spring. And later that summer I was informed that the nomination was then passed on to the regional competition and we won that as well. If I’m going to be recognized by my workplace- there is no greater joy then realizing that while they appreciate my work- they also appreciate my heart and those it belongs to. The next year we did the same fundraising and actually had friends join us for the walk. I managed to write and then, well then the big void came on, but all the voidier than even the years past.

Each November 1, I breathe a little easier that I made it through the month. And each month following November 1, I find that I write and share less and less. It’s not that I have less to say. It’s that I have more to do. More I want to do. In real life. And then, I read an especially insightful passage or post that I have so very much to say about and I think I’ll make my own post and get back to regular writing because it really feels so much better when I do make the time….

…and then it’s time to sing the “Rise and Shine” morning song to three little sets of ears that pretend not to hear me as they burrow under their blankets until I get good and loud and practically heave them from their sleeping nests to herd them to their respective dressers, followed by their frantic dickering over plastic bowl and spoon colors and proper craisined and raisined proportions of Cheerios, Kashi and Chex Mix like they are buying and selling stock on Wall Street. This continues until it is time to lecture them that they are again running late and we must leave for school precisely three minutes ago and why has no one brushed their own hair or taken their allergy meds and what do you mean you don’t know where your dance shoes are and that you had jump-rope team starting five minutes ago and no you don’t need your hoodie zipped but you do need a clean straw and cup and hurry to the car and the neighbors are probably getting an unpleasant earful and I promise you Sugarplum that Momma’s need to go to work today is no different than it’s been every weekday for the last three years and of course I’ll come home and take care of you and please let go of my leg and go back in the house.

And somehow we all end up singing “Shake it Off” or “Bad Blood” only minutes later as we screech into the drop off line and wave to the teachers and bless the safety patrol for their “Have a good day!” wishes and switch off the Taylor Swift after maybe one more song, cause it’s really for their tweeny hearts and click on the audiobook for 40 minutes of peaceful drive-dreaming on the way to work. Almost ten hours later, I arrive back at the daycare that’s really their second home after almost nine years and reassure the new staff that we’re happy to pick them up sandy and sweaty and grinning with questions of if it is a McDonald’s night or a pizza and a movie night as I attempt to herd them back to the car before answering in the negative to avoid the semi-routine public scenes we are so prone to so that we can hurry home to ignore the piles of laundry; not so lovingly referred to as Mt. Washmore, and unload the dishwasher and bribe the almost nine-year old with quarters to refill it and tear the nerf sword out of the three-year-old’s tightly gripping, blue markered hand again and look up the answer to the six year old’s question about if she has computer lab or P.E tomorrow and set my alarm for 4:45 a.m. with an intention to go for a run and take my melatonin and start the nightly Netflix debate of Dr. Who versus The Bridge with Lovey after which I *may*sneak a pack of chocolate covered banana dippers from the back of the freezer where they are hidden from the world before falling in to bed to start the whole process over again, maybe a little bit better rested, maybe a bit better prepared, maybe a bit calmer….or maybe just again.

So all of that is to say that I’m not quite sure what I want to focus on this month. But I wish that I did know. At least then I could stop feeling bad that I’m certain I don’t have time to participate this year and just start writing. Last night during our nightly Netflix hour, I said to Lovey that I was sad I couldn’t do the blogging challenge this month. His response was that was nonsense, just pick a photo and write what you think and feel. It doesn’t have to be a novel.

Then this morning, while I glazed over Facebook with my spoon in my Cheerios after not running, I saw an article share about the importance of really questioning yourself about who cares if you are running slow. About how most athletes are hounded by negative self-talk- whether they routinely run a 6 minute mile or a 15 minute mile. While the fact of the matter is both of those extremes are still running. And I got it. Again. That when you tell yourself you can’t do something you want to do, you begin to believe it as fact rather than the negative self-talk opinion that it actually is. And then, you don’t even try.

This.

This relates to so much more in life than just running. You can say the same about writing and cooking and traveling and parenting and friend-making and group-joining and education and inclusion. When you tell yourself you can’t, you don’t put much effort into seeing if you possibly could. It shapes your actions and your intentions. You don’t work hard, because you gave up before you even start trying.

If I run slow, and write less and start my non-dieting lifestyle over yet again and cancel my plans and page back to reread that chapter on my kindle and have to say “I’m sorry I raised my voice” to my children and husband and “We’re going to try it in spite of those issues” to the Quail’s IEP team and Zuzu’s dreams of competitive dancing while wiping off Sugarplum’s skinned knee with her polk-n-dotted shirt that, while clean remains unfolded on top of Mt. Washmore, then that’s what I’ll do.

I turned to look at Lovey as he said these four words as a statement of fact. The Quail had just finished her Monday night homework. Each week in kindergarten they study two letters and part of the lesson plan is creating a book for the letter with a picture of something starting with that letter for them to color and a simple sentence such as “I is for ink.” There are usually 4 pages to the story of things the letter stands for with the last sentence being slightly different from the first three but rhyming with one of the objects. The first few weeks we struggled through these books with one of us reading each word, pausing and waiting for the Quail to repeat it before turning the page. Somewhere between G-H and I, we stopped reading it to her and she started taking the book in her lap, pointing to each word as she articulated it oh so carefully before turning the page and moving on to the next sentence. When she came to a particular word that was hard we would point to the picture and pause seeing if that clue would help her and if it wouldn’t, then quietly starting the sounds of the word until she jumped in. She can read. She has Down syndrome. She is five years old. She can read. These things are all true and ordinary and yet, amazing. This newest fact about her, it snuck up on us. The practice of learning to read has so infiltrated our daily activities for the last three years that by the time she switched from learning her letters to actually reading, it was just a fact of our day, unspoken, until Lovey voiced it out loud.

We had been working on her “reading” some simpler board books with repeating or rhyming patterns over the last year. Pointing to each word, us saying the word as the approximation she was capable of saying, then her repeating it. Prior to our offering up approximations of the words on the page when we would ask her to repeat a word, she responded with a simple no or shake of her head. She knows what she can do and what she can’t and if it was a word that she didn’t have the motor planning for, she wasn’t going to attempt it simply to amuse us. Once we started speaking her language though, it was like we had opened up a whole new world for her. She enjoyed it and eventually could go through a couple of board books with us pointing to each word but not needing our verbal prompt. A lot of this was memorization more than anything else, but then one morning with the book that came home from school she was trying to sound out the word “One” in the title and was running her finger under the word as she spoke.

Back in her second year, we were in a physical therapy session where the Quail was not being cooperative. Or even very nice about the lack of cooperation. And had been having a string of not-very-nice-non-cooperating sessions. It was understandable that the therapist was burnt out on her. Unfortunately, he didn’t express the issue as that. He chose to say, “She’s never going to crawl. We’re not going to work on that anymore.”

It was time for a new therapist. If crawling came easily to her, we wouldn’t have been taking her to weekly sessions, writing down the exercise instructions and putting her through the paces on a daily basis. And then, there are all the ramifications of not crawling to consider. Telling us that she isn’t going to crawl is not just about her not crawling and choosing a different mode of ambulation. If we accept that statement as a fact, simply because it is being presented by the professional as one, then that sets us up for a series of other facts to expect as development expectations for her get even harder. Will she learn to read? How will her speech that is already impacted by her low tone suffer? This therapist’s single minded decision that crawling wasn’t something he was going to continue working on really wasn’t just about physical therapy- it had an impact on her future vision, her reading, her speech. The motor functions and speech production parts of the brain are both co-located in the frontal lobe. And the cerebellum, at the back of the brain not only coordinates motor functions, but also coordinates higher functions such as language. The repetitive crawling movements help to weave together both sides of the brain with the contra-lateral movements. This is one of the first opportunities for the child to learn how to use both halves of his body initially independently and then together. This develops their binocular vision, it teaches the eyes to cross the midline. This is a skill they will need in order to read. They will have to look from their hands to the path in front of them in order to keep motoring forward. This sets the pattern needed in school to transfer information given in front of them to the work on their desk. Research has shown that there is a strong correlation between crawling and the ability to comprehend written language. Space perception and object permanence are learned during this developmental period as well. When the reflex is inhibited that can lead to future problems attaining more complex skills. For most typical children, this isn’t an issue. But when your child has motor planning issues that are significant, you end up teaching them the patterns until they can move through them more independently and fluidly. Let alone the social and emotional development that comes from a baby being free to explore their environment and develop a sense of control and independence. When significant hypotonia is thrown in the mix it doesn’t mean that your child can’t use their muscles, but it does mean that they have to exert more effort to strengthen the muscles. Both the effort going into each muscular action and the number of actions needed to move and strengthen that muscle. Maybe not crawling won’t cause future problems with vision, reading, speech. I understand that the potential for those issues is seen as being rooted in the basic Down syndrome diagnosis. But from what I can see for the Quail- the motor planning and hypotonia are the foundations of what prevents her easing past her developmental milestones. Once she knows how to do something- she does it. But we have to make the effort to teach her to do one skill after another so that she has the foundation available to her. This isn’t the same for every child and person with Down syndrome. How Down syndrome effects a particular child is individualized.

Zuzu said it best when earlier this month their school did their first ever Down syndrome awareness campaign and fundraiser in honor of the Quail and another child in their school. When Zuzu’s teacher was talking to her class about what Down syndrome is her dear teacher asked her if she would like to explain Down syndrome and Zuzu was pleased as punch to tell me about it.
“Momma- I told them that everybody’s Down syndrome is different. For the Quail it means it is hard for her to talk and her family does lots of things to teach her how to talk. We call them bite-bites. They make her strong so she can say what she thinks. For other kids they can talk fine but their Down syndrome makes it hard for them to do other things like walking. Everybody is different.”

Absolutely. And what works for us and our family is to educate ourselves on what the potential is if we do a particular activity and if we don’t. What are the pros and cons. The potential risk and benefits. If we accept that the Quail “won’t crawl” as a fact about her- what might that mean for her future development. We know that crawling is hard for her. It isn’t a reflex reaction that comes naturally. We will have to find a way to motivate and practice with her.

And so we did. And she did eventually crawl. Not before she walked. She did walk first. But we continued teaching her crawl. And eventually it became fun for her. A way to race her sister. A way to get to the TV remote or the snack that we Hansel & Gretaled through the path of our home so that there was an immediate reward to tide her over to the larger rewards to come later in life.

And now- she’s reading. And writing. The possibilities set before her by these small acts- they open up her world in ways that we can’t even imagine.
For more information on the influences and effects that crawling has on development see below:

Her disappointment rose in a wail that pierced the sleeping sounds of the family. I felt the momentary panic rise in me, knowing that I had gotten it all wrong. Hesitating while holding her over her pack and play, I tried again as she uttered a quick syllable sounding like “mo”. “Here is your lovey- mo-mo- is it a mo-mo you want? Or more nursing?” The cry rose a second time. I looked at the angry slash of time in front of me- 4 hours till I had to be up. 4 hours to rest if only, she would give in to sleep…

17 months and already something was this important. One last quick scan on the darkness in front of me and Lovey’s voice echoed alongside her cry, “Sugarplum wants the gauze blanket.” There in the middle of our crumpled bed sheets was the Aden & Anais that she had fisted along with her as I lifted her into our bed for a quick nurse a mere 15 minutes earlier. Only I hadn’t seen her do it in my own sleep haze, responding more on instinct and ancient teachings of what mothers do rather than the latest Ferberized suggestions of my generation. Behavior is communication.

No matter how old you are. Whether the behavior is good or bad. What looks like non-compliance for someone who isn’t articulate is often their way of connecting and telling us what they mean. Through any means necessary.

This has been the lesson surrounding our growth into a family. Zuzu was twelve months old when she had her first tantrum. I still can picture her sweet toddling self. She delicately laid herself prone on the floor in response to my denial of her request, careful not to scrape herself up adding injury to insult, looked back at us and commenced into a full-bore wail, fist and foot pounding session. It lasted mere minutes and she was still at the age where you could tip her upside down and her frown would become a grin and she would giggle and run off. As she grew and as the others came along though that trick became ineffective very quickly. Distraction in response to their requests has become less and less of a viable parenting option.

The Quail, she has had to rely on a physical means of communication for the longest of the three. From early on, even though she didn’t have the ability to take the language in her brain and translate it to spoken words, she has always been so very expressive – both in her pleasure and displeasure. It’s this passion without articulation that has been our main worry as to how she would function in a typical classroom. Her ability to say what she knows and be heard as a child with something to say and not just a as a behavior problem. Even with our thorough knowledge of her preferences and exposure to her dialect, we get it wrong. And boy do we know it when we do. That she can articulate.

Even still, we had so many things going for us heading into this kindergarten year. Over the summer, we made the decision to pursue an augmentative and alternative communication device (AAC) for her use in the classroom. She had done so well in 4k, really the only issues that stood out academically were her inability to articulate a full sentence. When we first met with Sharon; the district’s AAC specialist, she felt confident that the Quail could make good use of a device. She explained it like this: “It’s like going through life with something to say and duct tape covering your mouth. I think we share these values and understandings of the importance of communication. The Quail has things to say and we should give her the means to say it.” The first time we met with Sharon, the Quail spent the first few minutes happily playing by herself while we talked. As I leaned in closer to concentrate on what Sharon was saying, she suddenly interrupted herself and pointed at the Quail who had been tugging at my arm. “That right there is what I mean- she needs the words, “Look Momma.” She wants to show you something. Turning to her I questioned, “Look?” The Quail clapped her hands and showed me the picture she was coloring.

Something as simple as “Look” we hadn’t thought to put in her vocabulary. And that is the difference between her and the other children. She would learn to say look, just as soon as we thought to teach her it. But she had to be taught it. And we can’t always see so easily what it is that she is asking us for a word for. Beyond the basic, everyday words, we absolutely can’t predict what words she may need in the classroom when those of us that know her best aren’t there to even attempt to translate for her. Once she has the words- she uses them with her own intent and pacing. But to get her to that point it takes oral placement and practice before she can own a given word and pull it with ease from her brain to her lips.

That first meeting was in January of 2013. When we brought our plan to our IEP team, it was met with resistance. The Quail was making progress in her actual speech and had a glossary of signs to accompany it. The SLP at that time thought that really it would act more as a crutch than bridge to get her where she needed to be. We found ourselves in a triangle of opinions on which means of communication to approach most aggressively for the Quail- a PECS, an AAC, sign, speech? There were only so many hours in the day and most of the Quail’s day at that point was around people who knew her fairly well. So a decision was put off until we could more fully commit to it. Even during her 4k year, her teacher told us that while she had been so nervous about not being able to understand the Quail, she found by the end of the year that somehow she knew what the Quail was saying, however she was best able to say it. We are so thankful that it has worked out that way. And that she has managed to survive, even thrive in an environment separate from us. But as the lessons get progressively more complex it is hard to know how long it will take for frustration at not being understood will overtake patience and repeated attempts to articulate. Time will tell if a device will be the bridge to get her to where she wants to be speechwise. It will be up to her and our team to make it a viable option that is both useful and user friendly. We’ve made the decision though to go forward with it and now we wait for insurance approval.

In the meantime, she’s managed to make a place for herself in her class. She has a gaggle of besties that she plays with and talks about and asks to see. I get glimpses inside her head when she starts to share with me what she wants for her birthday this year and starts to tick off the friends she wants to celebrate with. Her teacher tells us how she has honed in on the difference in her body language when she is honestly confused. How she looks you in the eye, shrugs her shoulders and asks for help versus when she chooses to look down and away. Crossing her arms and very much acting out the part of an obstinate five year old- which to hear her teacher tell it, is really not so very different from anyone else.

As we get ready to leave the Buddy Walk, I lean back from hugging our friend and hear Lovey announcing, “This is the first year we have a team!”

Indeed. Last year one of Zuzu’s buddies joined us. That was really the first time we ventured taking someone outside of our family to the walk. Last year was also the first year that we put significant effort in to fundraising. And it paid off- in more ways than simply monetary. The feedback, support, love and encouragement we received was heartwarming to say the least. I may share here on the blog, and when asked I’m happy to expound. But asking people to walk alongside of us in this journey face to face or even email to email is not my strong suit. I’ve always felt like we need to take care of everything ourselves, pull ourselves up by our own bootstraps and all of that. Fortunately, for us, others have been happy to step in and walk along with us. And for that we are eternally grateful. We know we need this village of ours to light our way and warm our hearts. Thank you friends.

It’s Down syndrome Awareness Month! This is the month where those of us in the community raise awareness and celebrate our loves that happened to be born with a little bit extra. One way I like to do this is to participate in our cyber-buddy Tricia, over at Unringing the Bell‘s creation 31 for 21. Currently this is hosted by Michelle with Big Blueberry Eyes.
Here’s the skinny- and hop over there to sign up if you would like to play along: You post every day, at least once day, for 31 days (each of them in the month of October, which is Down syndrome Awareness Month) on any topic, to raise awareness about Trisomy 21. 31 for 21! (Topics about Down syndrome are not necessary, though it is encouraged that you mention why you are taking part in the challenge at some point during the 31 days.)
I’m taking part again for my sixth year because Disability Awareness and Acceptance has always been a part of my life story. The first two years that I joined 31 for 21 after the birth of the Quail, I continued on my typical daily blog posts at that time, taking care to ensure that I did post every day for the month. I was still able to maintain a semblance of order and time to devote to daily writing with the categories I initially organized my thoughts around. The third and fourth year, I had not had the time to post daily musings, in a good while, but I still had an extensive archive of photos I hadn’t had time to edit and share yet. So, I posted mainly images labeled with little tidbits about the Quail that make her both extraordinary and ordinary.
Then there was last year. I LOVED participating last year. Our friend Molly Flanagan had shot some wonderful lifestyle photos of our family and our daily goings-on and I had told her that I loved them so much that I could narrate a story about each image. And that is what I did. I still go back to these photos- they are a gift- each single one. And I reread the narratives and still nod along as if I’m reading someone else’s writing and story. I still find myself thinking- yes! That’s what MY life is like. And then others shared with me how they felt about this project. And how they could relate to it . And then writers that I love shared it with their friends. And then wonderful things happened. I borrowed the cowardly lion’s heart and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. I’ve never been so proud to have my village lift me up and help me help myself and others. The response was unexpectedly overwhelmingly positive. People I hadn’t had the pleasure to meet in person contributed and took the time to get in touch to say how Down syndrome is a part of their life and how lovely and inspiring our Quail is. The good people at my work took it upon themselves to write up our advocacy efforts in our statewide celebration for a nomination for a humanitarian award which we won this spring. And just this summer I was informed that the nomination was then passed on to the regional competition and we won that as well. If I’m going to be recognized by my workplace- there is no greater joy then realizing that while they appreciate my work- they also appreciate my heart and those it belongs to. This year we’re doing the same fundraising. Our Buddy walk is this Sunday October 5th. The fundraising at work will happen after the event itself, but it will still happen a couple of weeks later.

Now this year, I am not entirely certain where I want to be by the end of this month. My time to think and blog has dwindled. That sweet little hormonal shift that comes with nursing and relaxes me into a wordy melt up has ebbed as Sugarplum becomes less of a baby and more of a tiny, opinionated rebel commander pre-schooler. As the dishes pile up and the clothes wait impatiently to be folded and homework comes home in now two bursting-at-the-seams folders rather than one, my time is not my own. Life with three little girls is busy. There now is two little girls to dress for school and a third who insists she prepare to come along each and every day at the same early hour. There is carpool and jump-rope team and Brownie meetings, TOP Soccer and afternoon therapies. There are bowls of Cheerios and raisins and negotiations of how much milk is allowed to be poured over it to attend to. There are filibusters about the appropriateness of long pants in summer and short shorts in winter. There is hair to be brushed and detangled and pony and piggy-tailed and clipped. There are diapers and nursings and shopping as well as friends to play and eat and celebrate with. There are meals to put on the table, vegetables to be wearily eyed, milk and kefir stains to clean up and ears to be scrubbed before jammies can be carefully pulled over the summer’s band-aided knees. There are Netflix binges to lull Lovey and I off to dreamland each night while we fall in to the couch covered with orphaned socks. There are morning alarms to reset when we decide maybe we’re too tired to take that early morning run and maybe we can just wait and do it at lunch time. And there is yoga to go to at lunch when we realize we really do need to take a minute to just pause and breathe and we can run the next day. Life is busier than it has ever been. And while I wouldn’t change a thing about it, it is still a three-ring-circus, albeit my circus, my monkey’s as the meme goes.

That way of writing and relating our days was so cathartic last year. But it also assumes quiet bits of time to notice and reflect on the ordinary moments of our days in order to illuminate and convey the grace in them. And that, my friends is time that is hard to predict will come. And the pressure to share in this way I love and not just randomly is great. It is so great, it’s a great big block, knocking upside my writerly head.

This is just the reality of my now.

And while it flusters and frustrates me, it also just is. I’m only human. They’re only kids and the days we have together fly by in the beat of a heart. The days really are long and the years really are short. I still try to notice the little things in our days. I still feel a deep compulsion to capture them in too many stills so that I can stock my mind and heart with them for quieter days to come.
So once again, I will commit to sharing images of our days. And hopefully a few writings about them. As time permits. And the children sleep, and before my brain nods off. Which it is prone to do without warning these days.

This post is part of the series “A Day in the Life” that is a celebration of World Down syndrome Day – 3/21. For lots of other posts on “A Day in the Life” – or to contribute your own post, please visit Down syndrome Blogs.

Shortly after I hear one door close another one opens. I turn away from the machine, my coffee steaming as I take a sip and spy her small hand reach around the doorframe. Sleepily she creaks the door further and pads over to where I’m standing. I lean down to kiss her tousled strawberry mop, sinking onto the floor in front of the kitchen sink. As I make a lap she folds herself onto it, hiding her face from the fluorescent light she wasn’t quite ready for.

“Morning Baby.” I lean in smelling her night’s sleep and carefully place the overflowing coffee away from us as she pushes her hair out of her eyes.

It’s Wednesday morning and it is early. 6:16 AM to be precise. Each day I intend to wake early enough to have a quiet cup of coffee by myself and do a little writing. Each actual day I wake a minute before the alarm sounds, turn it off, and roll on my side to listen to the soft snores of the baby before lightly stepping past her into the bathroom. Strangely, now that Sugarplum sleeps through the night, I find myself needing more and more sleep rather than less. I’m not sure if it’s the creak of my slippers down the hall, the flick of the light in the kitchen or the press of the Keurig as I snap my k-cup into place and add the cup of water, but the sounds of my morning starting have been consistently triggering the Quail’s weekday morning starts for a good while now. She seeks out a quiet moment to soak me in before her day starts and really, I don’t mind. I can write later.

“You woke up at 6:15 Quail?”

“Yes.6-1-5 me. Zuzu sleep.”

“Zuzu is still asleep?”

“Yes.” She makes the sign for sleep and grins up at me, the precision of her yes pronunciation drawing out steady and confident. She shares a bed with her sister and while the cry of “She’s on my side of the bed again!!!” and “MOOOOVVVVEEEE!!!!” sound frequently from both of them, it’s what they know. What they expect.

“What day is it?”

“Wednesday! Shannon! Jan. Bobson. Lee. Oriana. Nekaelah”

While a stranger might not know what she is saying, contextually I understand her still garbled day of the week and that she is telling me that she knows she has speech therapy with Shannon before heading in to begin her school day with first Ms. Jan, then on to Ms. Dobson and Ms. Lee. She knows that when the school day is done she will look forward to heading back to her private school for after-school care and playtime with her favorite kiddos, her friends Oriana and Nekaelah. She knows her routine and what to expect.

“Who will you play with at school today?”

“Or-ee-annn-a. Ni-KAY-la.” She carefully sounds out their names again. Names that she has taken great care to learn to pronounce so that no one can be unclear these are her friends. Who she looks forward to seeing and playing with each day. These are friends she has made on her own. Not friends of our family’s, not anyone we know outside of her introduction to them.

Shifting my weight a little she stands up and asks again. “Eat?” her sly smile telling me she already knows the answer. A year ago I would have just told her no, not yet; not expecting any further conversation on the matter, only fury at my denial of her request. Now though, it’s a good chance to engage, to talk, to practice pronouncing our every day vocabulary and thankfully, avoid a tantrum.

“You want to eat? What do you want to eat?”

“Um….” Her little finger goes up to her lips as she raises her eyes in contemplation then starts touching one finger to another as she labels out each item in turn, “cereal, rai-sin, keeee-fir, go-go squeeze! Cake?”

“We’re out of go-go squeezes and cake. We can buy more of the squeezes this weekend though. What do you do before we eat?”

“Potty. Bite-bite. Clothes. No potty. No.”

Still avoiding the fight, I ask, “Do you want me to pick out your clothes while you go potty or do you want to?”

“Me!!!! Purple. New shoes.” At this she turns and runs down the hall, stepping quickly around the tiny shopping cart overflowing with toys. She pauses briefly at the living room door, looking longingly at a neat stack of books on the side-table just waiting to be read and played with before checking back to see if I was coming with her or not before continuing into the bathroom.

“Momma! Sit!”

I lower myself on to the side of the tub finishing my coffee as she tries to undo the snap on her fuzzy, feeted pajamas before letting out a scream of frustration a few inches from my ear.

“No, ma’am. No screaming. Ask for help if you can’t get it undone.” She quickly signs help and then pulls back away to work on the zipper once the snap has been opened. Patting the side of the tub, she signs for me to move closer and leans her head on my knees while she finishes up.

I turn on the light to their room and sing out to Zuzu that it is time to get up and get ready for school as the Quail yanks on her dresser drawers pulling out a half dozen pants looking for a pair with purple on them.

Zuzu used to be our early riser. So early that a rule of not leaving your room before 6 AM on a weekday had to be enforced the previous year solely because of her. Now, she needs to be woken each school day and urged to do the half dozen tasks it takes to get herself ready before we leave by 7:10 to get her to school and me to work on time.

The Quail slams her shirt drawer shut and dives into her sister who has crawled up on my lap. As Zuzu protests at the slight dislodging this causes, the Quail’s voice trails up with hers and I shush them both with a reminder that we want to let Sugarplum sleep.

Lovey comes in fresh from the shower and takes the reins as I sigh at the clock’s having moved too far forward for me to do any writing or manage a second cup of coffee before we need to leave in our manic out-the-door-right-this-very-second-what-did-we-forget-this-time-hurry-up-we’re-going-to-be-late-if-you-don’t-put-your shoes-on-right-now-privileges-will-be-taken-away-I-mean-it-we-have-to-go-hug-your-sister-yes-you-have-to-wear-a-coat-where-is-the-sunscreen-who-took-my-shoes-shit-we’re-late-again daily rush.

I kiss the Quail’s head as she sets down the Ipad and tries to scramble away from Lovey who has gotten out her oral-motor exercises. “HUG!!!” She bellows as I lean in to acquiesce. “Bye-bye. Momma. Work.” Turning away from her I breathe in the fading scent of her sleep and hustle to the door.

That evening I’ll pick her up from after-school care, covered in sand, sunscreen and smiles and she’ll test my tired-out-patience as she darts in and out of the little school’s rooms giggling at the freedom now that the teachers have gone home for the day. “Donald’s?” she’ll ask. I’ll tell her no, reminding her we ate McDonald’s the night before and ask how her day was. She won’t answer- she’ll be too busy chasing Sugarplum and Zuzu.

As we pull out of the parking lot, carseat buckles secured, I’ll ask if they want their windows down or the radio up. “YEAH!!!! Drive fast Momma! Turn on a girl song. Make the windows lower!”

“Yeah!!!!” the Quail will chime in mirroring Zuzu’s enthusiasm for the car ride. As the latest pop song chimes through the windows I find myself surprised to hear not just one, but two voices bubbling along now from the backseat. By the time we’re home though, she will have rested her chin on her chest and be fast asleep. Between her insistently early start to the day, a therapy session, private 4k, public 4k, after-school care and the students we bring in daily to help her practice the activities she learns in therapy, her little self is usually beat.

Getting out of the car at home, I come around to carry her into the house as she snuggles up to me whispering. “Peg. Cat. Eat. Drink” in my ear. I answer with the need for her to empty the sand out of her shoes on the porch and then go potty first and her head jerks up off my shoulder in protest. As we settle into the bathroom for the millionth time of the day I not-so-patiently contemplate how much it would cost to switch our bathroom with our living room so that we could have more space in the room we actually seem to live in.

After tubbies are done, I reach for Sugarplum for a quick nurse before heading into the kitchen to see what Lovey is getting out for dinner. All seems quiet until the Quail peels herself away from PBS to look for us. I hear her questions before I see her, “Eat? Drink?” As she pulls her grinning self up on to the bed next to us she peppers us with questions, “Bread? Kee-fir? Ba-na-na? Pizza? Cake?” as she proceeds to pounce on top of the previously quietly nursing baby. Giggling Sugarplum lets go and engages in the rascaling as I sigh, cover myself up and head back to the kitchen.

Finishing up her dinner with slight disappointment over the lack of cake and pizza. The Quail asks for more to drink and then stomps her anger out of the room as Lovey lets her know she can have another cup of kefir after we do her bite-bites. Finishing up my own dinner I let the baby out of the high-chair and holler for Zuzu to come back and practice for her math quiz while Lovey loads up the dishwasher.

Once we finish up our oral-motor exercises, the Quail climbs back down off the couch. “Drink. Kefir. More. Backpack. 3-1.” I trail after her back into the kitchen to refill her strawcup as she unzips her backpack pulling out her book that came home from public school for us to read together. Gently she turns it over pointing out the number 31 on the back cover. She may not be able to pronounce, “The Elves and the Shoemaker”; but she knows it’s her favorite story from the collection at school and she knows its number 31. And now we do as well. Sitting back at the kitchen table we finish the story and she packs it back away as I rinse out her cup.

“Up” her little hands reach up to me as she asks me to carry her back to her room. 7:45 pm. A little before bedtime. Lifting her up into my arms with all my good intentions to finish up the evenings chores after the girls have gone down to bed, we head back into the living room to kiss the other’s goodnight and Lovey joins us while we tuck her in alongside her duck lovies, yellow doggy blanket, cabbage-patch kid named Niles and Abby doll. Just as I start to tell her how very much I love her, my words are met with soft snores.

The day is done.

Lovey turns on her dreamlight, I set the sound machine to soft birdcalls and we back out of the room and close the door behind us.